MY STORY WITH ALZHEIMER'S

Monday, December 19, 2016

alzheimers news-am i in

ALZHEIMERS NEWS-AM I IN
this last friday
as my wife she and i were driving up to dallas
to the alzheimers center to begin this journey
hopefully
to get a new treatment for alzheimers disease
that may slow it down or if we are all lucky
stop it in its tracks

i did a lot of contemplating as i drove north
thinking back over the last 6 years
when
we made this same journey to the center
then
i was simply volunteering to be in the normal control group
of the large alzheimers study
alzheimers disease neuroimaging initiative phase 2

i was simply going up
to do my part to further our knowledge of what happens
in alzheimers
and
at the same time start a monitoring process for myself
since
it runs so strongly in our family

friday
as i sat in the same damn chair that i sat in
6 years ago when all this happened
i looked out the window
well the blinds were closed

in my reoccurring dream i have about this
there is a large tree growing up to the 4th floor outside
this window
in my dream it is a sycamore tree
i think because my grandparents one who had dementia
had a huge sycamore tree in their yard
and
i use to climb on it as a kid

all that really is there is just the windows of a building

but as i sat down to take the memory test friday
the same tester was giving the test that gave me the first one
i said you know in my dreams there is a big tree out there
she smiled that sweet smile of hers

now 6 years ago
i was broadsided by failing my memory test
ive done the thing so many times now
i know the parts i cant do very well
interesting is
some of the parts i have gotten better at
some i dont do as well

now
this study is called the aducanumab study
by the company biogen
of all the drugs out there right now
it has the most promising chance of being successful

i have had my eye on this study now for several years
well
i have fought hard to get into it
knowing that this could be my last chance to
plug into one of these new drugs
if i wait too much longer
i may to late for them to do any good
so
i know its now or never for me

now i continue to do all the healthy things i should be
doing
the same ones that all of you who read this should be doing
control blood pressure cholesterol weight
do exercise eat right get sleep avoid stress etc

all those no matter what i will keep doing
oh if you are genetically kin to me you should be aggressively
doing the same
since this drug is really meant for those of you
who have no symptoms but are going to get alzheimers

yes i was a little bit nervous
its like a terminal cancer patient
getting this glimmer of hope
from a new research drug
that will slow down the cancer or cure it

this is what this study means to me

so here we go

we arrived there at 930am and left there at 200pm
with no downtime

first
we met with the screening nurse
who went over the lengthy protocol with us
who went over my medical history with us
who took my vital signs weight etc

then
second
they drew some blood
well a lot of blood
i think i counted 10 vials of blood
its 2/3 of a can of soda
now i didnt faint
but
i need to eat a lot of iron foods for awhile to build
my blood back up
its almost like donating a unit of blood

they are testing cbc chemistries ua all kinds of biomarkers
genetic tests dna and rna studies etc
even saving some for perpetuity
in case its needed for more research some day

i realize i have my blood stored all over the place
across the usa

then
third
since i didnt pass out
i was able to proceed to the next testing
the much dreaded memory testing
it took about an hour
i did parts of the mmse memory test
some components of the moca test
and
a new test thats used specifically for this study

to get in this study
i have to be in the upper part of the mmse
but
must have difficulty with parts of the short term memory part
that correlates with mild cognitive impairment amnestic type
the stage right before alzheimers disease

knowing what i know from taking these things
i passed the mmse and will qualify based on how i felt i did
i had difficulty with the parts of the test that is correlating
with what i have noticed in my day to day life
which is what they are looking for

so far after these three things i feel like i am qualifying
for the study

then
fourth
i underwent answering questions on my memory
by a alzheimers center interviewer
comparing what my wife she has told them
to what i say

first question
do you have memory issues
the answer
yes
granted its subtle probably not recognizable to most
folks who know me

then
fifth
i underwent a lengthy neurological history and examination
by the main investigator at the alzheimers center for
this aducanumab study
he was good at picking out the parts of my history and exam
that correlates with my memory loss

so
at the end of the day
how do i feel about my chances of getting past this step
i feel like i met the criteria
unless something is hidden in the labs somewhere

all this information is sent to the biogen folks
to review
they make the final decision

if they say ok
then
i have an mri of the brain
if i pass that one
i have a amyvid pet scan for the bad beta amyloid
the test that is missing from all that i have had done

the one
that i feel will give me my final answer
the one
that will provide me with what i need to plan
the rest of my life